Let’s talk about Retinoblastoma: A conversation with two fathers
MFV staff Shrikant Ayyangar speaks to two fathers about retinoblastoma and their children's journey so far.

After an early-morning journey from Mumbai to Pune, my colleagues and I entered the waiting area at PBMA’s H.V. Desai Eye Hospital (HVDEH). Two young men were seated on the bench quietly and waiting for their children to be out of the operating room (OR). Hidden under their masks was a mix of emotions which their eyes expressed. As soon as the doctor stepped out of the OR, both men stood up in anticipation and listened attentively to every word being said by the doctor. They were relieved to hear that the treatment procedure was smooth and both the children were in a semi-conscious state due to anaesthesia.

Post their brief meeting with the doctor, there was a shift in their tense faces. After all, both the fathers were at the hospital to get their children treated for retinoblastoma, a form of eye cancer affecting young children and babies. 

The Dreadful C Word

Cancer remains a dreadful term that jolts every person with the same impact, regardless of their financial status. The low-income communities are faced with a much challenging path to traverse in terms of accessing quality care, particularly getting these services at a nominal rate. Compounded by lack of awareness and many misconceptions, the situation worsens and it can even lead to loss of life in some cases. When I spoke with Sanat’s (name changed) father, he shared that when they visited a local hospital, they were informed that their child is blind and nothing can be done. Though the family was devastated hearing this, they were not fully convinced. Based on the advice from their neighbours, they reached out to HVDEH. It is here that they discovered that Sanat had retinoblastoma and this news broke down the grief-stricken family further.

Sanat’s father shared, “We felt as if the whole world came crashing down around us. While we were reeling from the shock of our child going blind, the cancer diagnosis made it even worse. Apart from saving our child’s precious life and sight, we were starting to worry about the expenses.” 

Luckily, Sanat’s parents were at the right place at the right time. With the generous support of Wen Giving Foundation, Mission for Vision had launched the Mission Jeevan programme in partnership with HV Desai Eye Hospital. This programme offers timely screening, counselling, financial aid, and treatment to children diagnosed with retinoblastoma. Enrolling Sanat under the Mission Jeevan programme dissolved his parents’ worries in relation to the medical expenses. They were also counselled and informed that with timely treatment and regular follow-up, they could not only save Sanat’s life but also retain his sight. Sanat’s father works as a painter and his mother is a homemaker and they have two more children (1 boy and 1 girl). 

Sanat’s father added, “With three kids and me being the only breadwinner of the family, I was quite worried on how we will manage the medical expenses - and that too for cancer! My family and I are very grateful for this noble gesture. It is not just about the monetary aspect, but we noticed that there is a genuine care and concern for this cause by everyone who is supporting this programme.”

Over and Beyond

To ensure a holistic approach, a large part of the programme involves patient counselling. During these sessions, the hospital staff at first comfort the parents and then share a realistic picture with them. There are no false promises made, as cancer still remains a mystery and can even lead to potentially devastating turn of events.

Arsh’s (name changed) father who works as a driver, shared his experience, “Once we got to know that our child was suffering from retinoblastoma, the hospital team comforted us and asked us not to fear. They shared just the facts with us and the same trend continues even now. The hospital team and doctors also counselled us on informing the school and the teaching staff about this condition. Although Arsh will require some special treatment at school, the main intent is that his learning will not be hampered in any way. He will be just like other kids.”

Our aim is to generate greater awareness among masses and also sensitise the communities and medical groups. Learning from Sanat’s story, we certainly don’t want any parent to be misinformed about this serious condition. Apart from the community outreach activities, our goal is to raise greater awareness on this issue via digital media channels and garner media attention to amplify it further.

The Journey Continues

As we packed our laptop bags and got ready to make our way to Mumbai, my colleagues and I were in for a surprise. We got the opportunity to meet with Sanat and Arsh, as they had regained consciousness. Although there was a sense of calm on the exterior, it was evident that these children have been through a test of persistence and resilience, particularly at a very young age. Salute to the indomitable spirit of these children and their parents who continue to battle this serious condition, with never ending hopes and beaming smiles.


Resources and Information

We also hosted a webinar on this topic to mark the Retinoblastoma Awareness Week 2021 and brought together sector experts to share their views and strategies. You can watch the webinar here: https://youtu.be/XYyQjAVnO-w 

If you would like to know more about this condition, here’s a video where Dr Sonal P Yadav (Consultant- Ophthalmic Plastic Surgery, Orbit and Ocular Oncology, PBMA's H. V. Desai Eye Hospital) explains in detail about retinoblastoma and the symptoms to watch out for - https://youtu.be/UHKX5QgBvYg


About the Author: Shrikant Ayyangar is the Lead for Communications at Mission for Vision, where he spearheads the organisation’s communications efforts and plays a key role in communication strategy, website management, social media outreach, media relations, content curation and branding activities.